Aloha! For those who may not know, there weren’t any resources in Hawaii for people living with ALS and their loved ones, until the Golden West Chapter officially began providing dedicated care services in 2014. These resources, offered free-of-charge, have been a groundbreaking development for our ALS community. Unfortunately for my family, this much-needed support came more than thirty years after many relatives – including my aunt, my great aunt, and my grandfather – were lost to ALS.
My family, the Kapuwai and Makaenas Ohana, have the gene for familial ALS (FALS), which accounts for about 10% of all ALS cases. In total, we have suffered the loss of 14 relatives to ALS, including my beloved grand aunt, Beverly Keohokapu, who died from this devastating disease just this month.
It was very difficult for my family to access enough care for my grandfather (Papa) before he passed away in May 2000. Ever since the Golden West Chapter expanded its service area to include Hawaii, we have appreciated the Care Managers who partner with our family and who have done everything from check-in phone calls, to home visits, to other extra help. The Chapter’s many programs like the support groups have also been indispensable for families facing ALS. My grand aunt, Beverly, was even able to obtain a free shower bench through the equipment loan program. The Chapter’s Care Services have benefited our family greatly, and one day, we hope to give back to the Chapter just as much as our Care Managers have given to us.
I remember in 2015 when my aunty, Pinky Kapuwai, started to lose feeling in her feet. She was experiencing drop foot and would miss steps when walking. Pinky was then diagnosed with ALS at the age of 48. Although my whole family helped, it was still hard to care for Pinky. Anxiety and fear caused me many sleepless nights. Then, in 2017, Pinky asked our family to join alongside her in the Golden West Chapter’s Hawaii Walk to Defeat ALS. Since then, our #teamPINX, in honor of Pinky and all of the Kapuwai Ohana, has brought our family closer and given us the collective power to fight ALS together.
Pinky died of ALS in 2018, but our team still participates in the Walk to Defeat ALS. We choose to gather together and walk to bring help and hope to those who are fighting ALS today and those who will be diagnosed in the future; and in memory of the beloved members of our ohana who have passed. This will be our fifth year participating, and our team is already 40 members strong!
It is difficult to watch this disease progress as your loved ones live out of a bed and wheelchair until they pass on. That is why we all try to help out in any way possible. The Walk to Defeat ALS allows us to reduce the isolation of ALS and spread the word in Hawaii about how serious it is. Getting involved locally is important, so that we can continue the search for effective treatments and cures.
This disease is no laughing matter, and we must continue to fight for our ohana. I hope that you will join us. Truly, it is only together that we will defeat ALS.
Granddaughter, Niece, and Aunt of the Kapuwai Makaena Ohana
Familial ALS Advocate
Team Captain, #teamPINX
We walk in loving memory of …
Coreen Dijos, Darrell Kapuwai, Mary Kapuwai, Pinky Kapuwai, Samson Kapuwai, Sherry Ann Kapuwai, William Kapuwai, Beverly Keohokapu, Bingo Keohokapu, Thompson Makaena, Healani Pierson, Lani Rombawa, and Yolanda Sato
Proceeds from the Walk to Defeat ALS will provide critical funding for the Golden West Chapter's urgent mission priorities in the areas of ALS care services, public policy initiatives, and cutting-edge global research.